Waiting in Community vs Waiting Alone

Team Humanity Monday Messages of Hope #5

I was at the mall with my daughter when all of the sudden things went blurry, I got dizzy and I started sweating only around my right eye. I touched the rest of my face and it was dry as a bone, but a two inch circle around my right eye was suddenly perspiring. I asked my daughter to confirm what I already knew. “Does my right pupil look bigger?” I asked. “Yes,” she said, ”much bigger.” 

Neither of us were that alarmed as this has happened many times before in the past three years since my adverse reaction to the COVID vaccine. Then, I sat down and waited for it to pass. It happened one more time during that shopping trip and has happened several more times since then. Each time, I remain calm, acknowledge the issue with curiosity as to what could be triggering it and…wait for it to pass.

Similarly, I was lounging on the patio chair and my muscles on my left leg started twitching. This is not new for me over the past three years either. It has been amped up more lately and it usually happens even more when my body is in a flare. The twitching can happen anywhere on my body when I am both at rest or moving. It isn’t necessarily that painful, but it is extremely distracting and it isn’t something I can control or shut off. I have to be patient and…wait for it to pass. 

I also get sharp, shooting nerve pains that I refer to as bee stings. They are also random, cannot be controlled and are very painful. They are usually quicker, just like the sharp initial poke of a bee followed by a lingering warm spread of pain to the surrounding area that lasts longer. What do I do on these occasions? I think you are seeing a pattern here by now, I…wait for it to pass. 

And then there are the random moments of strong heart pounding palpitations, diagnosed by heart monitors as Supraventricular Tachycardia. These intense experiences do usually stop me in my tracks if I am moving, but can even happen while laying flat on the couch watching tv or while sleeping. Sometimes I use the bear down technique that the most empathetic of the 6 cardiologists I have seen has taught me to get it to resolve faster. Then I…wait for it to pass.

This too shall pass is the old adage that has saved me many hours in ER’s with thousands of dollars spent and no answers. I do get concerned from time to time that I have minimized signals that my body has sent me that do need emergency attention. But it sure beats how I spent my time at the beginning of this adverse reaction journey. ER’s don’t yet have a protocol to handle those coming in with reactions. 

Those of us who are suffering reactions have become accustomed to waiting. Not only do we  wait for symptoms to pass, we wait in ER’s, in specialists offices, in functional medicine offices, and on hold with insurance. We are also waiting for empathic health care professionals and leaders to take an interest in our adverse reactions. We are waiting for our government to revise or replace the Countermeasures Injury Compensation Program to help ease the financial burden of the reaction as the pharmaceutical companies have no liability. 

Waiting can sometimes come with advantages. It gives me a long enough pause to learn what is most supportive to me at any given moment rather than jumping into a panic mode that will amp up my now extremely hyper sensitive central nervous system. But, waiting needs to include the element of hope. When hope is missing from waiting it becomes despair. Despair is dark and lonely. 

Waiting in hope provides a light; that the most difficult pain and symptoms will pass and get better, that we will finally meet that specialist that takes an interest in our case and acknowledges that the vaccine changed our life, that insurance will approve the treatment our sympathetic doctor is willing to try to bring some relief, and that our government will approve bills H.R.5142 - Vaccine Injury Compensation Modernization Act of 2023 and H.R.5143 - Vaccine Access Improvement Act of 2023 to provide a more just program for those that suffered reactions. 

For me, Team Humanity provides hope that despite our differences we can see each other’s suffering and sit compassionately together in the painful, lonely and scary times while we…wait for it to pass. It’s knowing that we are bound together by the connective thread of what it is to be human, what it means to suffer and what it means to be in community. Team Humanity is the community where we stand united in justice together while we wait. Team Humanity is the community that eases the feeling of being alone in our suffering, feeling abandoned, cast aside and dismissed. Team Humanity erases the I and becomes a WE as together WE…wait for it to pass.